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  • Colds, croup and allergies in my Type 1 SMA baby

    Posted by cocoseverest on March 11, 2018 at 6:53 pm

    Yesterday I noticed my 2 year old (non-SMA) woke up with a barking cough and congestion. She’s been battling allergies off and on for a couple of weeks, but that barking cough really got my attention. Later that night my 3 month old (type 1 SMA) began to sound congested and all through the night I was suctioning light green mucus from her nose, and she genereally had trouble breathing while sleeping through her stuffy nose. Not too bad though, just uncomfortable, I’m sure. All day she’s continued to have lots of clear watery mucus and some white/light green boogies in between. She’s fussy and sounds congested, but she almost always sounds like she’s having trouble breathing since before becoming sick with a cold or whatever this is. She doesn’t have a fever, she does have a junky cough and congestion, and irritable between some smiles.

    My question is, when did you parents know to take your babies into the ER for possible respiratory complications? (Its Sunday, otherwise I’d call her doctor, and the nurse line said to take her in right away after listening to her gurgled breathing, however I’m sure she’s not familiar with normal SMA breathing, which sounds bad in itself.) Any insight will help!

    deann-r replied 6 years, 4 months ago 4 Members · 6 Replies
  • 6 Replies
  • kevin-schaefer

    March 11, 2018 at 7:03 pm

    Hi Jessica, great question. So I’m 24 with Type 2, and I’ve dealt with plenty of respiratory issues in my life. Mucus and secretions can be very common, especially during this time. I would say if you think it’s serious enough it’s perfectl justifiable to take your daughter to the ER, just to be on the safe side. This season has just been crazy with stuff going around.

    Also do you have a Vest Airway Clearance System? I didn’t start using mine until I was a teenager, but it’s extremely helpful, especially when I’m congested. Something like that could help for the time being, and then you could take her to the doctor tomorrow. But again it’s your prerogative.

    Hope this helps and that she feels better soon!

  • alyssa-silva

    March 11, 2018 at 7:54 pm

    Hi Jessica. If you have a pulse oximeter, first check her oxygen. If it is below her norm and she isn’t acting herself, I strongly suggest seeking medical attention immediately. As Kevin said, it never hurts to be on the safe side. Best wishes to you and your little one.

  • deann-r

    March 11, 2018 at 7:57 pm

    I know you’re asking for a parents perspective, and I’m hopeful you’ll hear from some, but I too have had my share of respiratory issues.  Do you have a pulse ox?  That can help determine if the cold is affecting her O2 levels and if she’s in distress.  My mom always liked to err on the side of caution and bring me in although you risk exposure to more germs.  I would rely on your mommy intuition.

  • cocoseverest

    March 11, 2018 at 8:37 pm

    Thank you for your replies! I do have a pulse ox machine, I haven’t had a chance to set it up. She is still breathing pretty good on her own and since started Spinraza (2 injections down) and so I didn’t feel a need to set it up for now, but you both are right! This would be a good time to set it up, especially through the night.

    As for the airway clearance system, I just asked our medical supply company how to obtain one this past Friday, before all of this started even, because she still gets milk stuck in her throat and gurgles constantly. I plan to ask her doctor to prescribe one on Monday.

    She seems to be doing well for now. The indicators you guys suggested help, and she seems fairly normal, just congested, and mostly clear drainage. And really mucusy poops, hehe. So I will just continue to keep a close eye on her, and call her doctor first thing in the morning.

    Im glad to get a response. This is all new to her dad and I, and we just don’t know how to handle sickness just yet. Thank you.

    • kevin-schaefer

      March 12, 2018 at 2:03 pm

      We’re happy to help Jessica. It’s definitely overwhelming, especially at the beginning stages of SMA. Please feel free to ask us questions anytime you’re stuck.

      Hope she feels better!

  • deann-r

    March 15, 2018 at 1:01 pm

    Just curious how everything turned out for your baby girl.  You’ve been in my thoughts.

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